6-MP Reviews

6-MP (also called 6-mercaptopurine or its brand name Purinethol) is a relatively common immunosupressive medication. Like most ulcerative colitis medications, you need to have a prescription and guidance from your treating physician to use this medication.

People using 6-MP may have a harder time with fighting off infection.

There are many documented side effects (as is the case with many medications) and some of these may include: vomiting, loss of appetite, skin rashes, dark urine. There is also a chance that 6MP may be toxic to bone marrow. More details about the medication and its possible side effects can be found on wikipedia’s 6MP page – here.

If you have used/use 6-MP to treat your UC, please submit a review on your experience and rating of the medication below.

6-MP Reviews:

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6-MP Mercaptopurine

Average rating:

36 reviews

Mar 6, 2018

by Autumn on 6-MP Mercaptopurine

Mercaptopurine Side Effects

I was not happy when I had to bump up to 6-MP to manage the inflammation in my intestines. However, it wasn't that bad, and I think it did its job.

For the first 3-4 months of use, I suffered from outrageous motion sickness. Car rides were tough. This eventually got much better, and the motion sickness became an occasional thing. When my dosage got bumped up, I had to go through this process again. I think my body just had to get used to it.

I also suspect that I got bad infections much easier. I went years without needing antibiotics prior to starting the 6-MP. However, I have needed antibiotics about once per year since for things like a chest infection that wouldn't clear and pretty severe tonsilitis.

All in all, this drug is definitely manageable, and not nearly as bad as I originally feared it would be.

No major side effects that I know of. I get occasional ocular migraines which could be from this medication. I also am carrying around an extra 40 lbs which could be from this RX as well. My UC is not controlled entirely by this medication. I am NOT in remission from this RX. It has taken my BM's from 15+ times per day down to 3-5 times per day. It is worth a try. Anything to stay off of the devil prednisone. I've had Pan Ulcerative Colitis for 16 years and this is the 3rd or 4th different time I've been ON this medication (I end up going off of it eventually, on my own).

Jan 18, 2017

by rfp on 6-MP Mercaptopurine

6mp has worked for me

I was diagnosed about 12 years ago. Tried Asacol, colosol, foams, and others. Nothing worked but Prednisone. Every time I dropped below 20mg/day I would flare, sometimes having,30 bloody bowel movements a day. I felt near death. Started on 6mp 5 years ago and did a very slow withdrawal from the Prednisone. Compete and total remission for 5 years now on 75mg/day. I eat everything and have one bowel movement a day. It took two years, but the left side pain went away. I did have one bout with 3 cases of bacterial cellulitis in 6 months. The infections spread scarily fast but responded to antibiotics. Might have been related to 6mp, maybe not. It has given me my life back. We are now free to travel, camp, eat anything. Although I will very occasionally have a beer or glass of wine, I do drink very little. Those folks that I know that had liver issues with 6mp continued to drink daily after starting the meds. I would rather keep my colon than have a few beers.

Oct 18, 2016

by Christie Chambers on 6-MP Mercaptopurine

on 50 mg 6-mp, as I was reducing prednisone, incredible break thru pain. Dr. increased 6-MP to 75 mg. and back to 40 of prednisone. first week completed and still eye pressure, shortness of breath, sheer exhaustion, but no abdominal pain. checking liver functions and blood count monthly, so far they've been ok.

Sep 5, 2016

by Christie on 6-MP Mercaptopurine

for Crohns

taking 50 mg a day with 30 mg a day Prednisone for Crohns. 3 weeks into first month--- no appetite, no weight gain, metal taste in mouth and incredible eye pressure. Crohns symptoms are under control, hoping to reduce prednisone in 3 weeks

Apr 5, 2016

by Gil on 6-MP Mercaptopurine

I have been taking 6-MP (Purinethol in Canada) for the past three years. Because of my weight, I was prescribed 150 mg a day. However, after a few months my blood test showed a small problem with my liver and I was then prescribed 100mg and again I had a slight problems with my liver and went to 50mg a day. My liver is fine with this dose and surprisingly so is my U.C. This drug gave me my life back and no trace of U.C. since. Surely this drug has serious side effect but so is U.C. as I had no life.

Nov 8, 2015

by Anne MacKenzie on 6-MP Mercaptopurine

6MP

I just started med. also on Lialda,and Mesalamine Rectal Suspension at Bedtime

I was diagnosed w UC about 45 years ago w several flares. My last colonoscopy showed moderate inflammation and active colitis, but so far no dysphasia. Dr says I have to get this under control as It can turn into cancer. So he s putting me on 6mp. I m only on 3rd dose. Still have bleeding. Was on course of

Prednisone 40mg taper x2 w better results the first time around w some symptoms relieved. Not so much this time. I m afraid of taking the 6mp but I know I have to. Scary! I have a good rapport w Dr and nurse though. I know they ll take good care of me

Oct 2, 2015

by Megan on 6-MP Mercaptopurine

If you enjoy side effects

I've had Crohns Disease for 12 years. Was put on 6mp in the beginning don't remember side effects then because I was put on so many other drugs. But this time around it is HORRIBLE. I've been on it almost three months. I have lots so much hair in a short amount of time. Comes out in the shower, everytime I brush my hair, just all day! I have a almost bald spot on the front left side of my head. Devastated about that right now. I can't go to the bathroom. Even on daily stool softeners it doesn't help. I have hemorrhoids or a peri annul abscess. Headaches every night. Clenching my teeth at night Sooo hard! Mouth guard doesn't help the pain. Random bumps all over body. Easily bruised. Sensitivity to sunlight. Night sweats. Acne is acting up. Hunger/eating habits are off. Random nausea. Constant bloody, sensitive spot in left nostril. Thinner blood.

Is that enough side effects to prove I absolutely hate 6mp right now. I am making the decision to stop this medication myself. No matter what my doctor says. The hair loss was enough for me. Now I have to recover from that.

Oct 1, 2015

by Christine McGowan on 6-MP Mercaptopurine

meraptopurine

I was prescribed this drug for ulcerative colitis. I took it for two years. Several months ago my white cell count was showing gross abnormalities and I was having side effects such as mouth ulcers etc. This month all of my blood results i.e red cells, white cells and platelets have been abnormal grossly abnormal. I had to stop the drug immediately. Following a bone marrow biopsy I have been diagnosed with myelodysplastic syndrome. I have already had two blood transfusions of two units but am now facing having five or six cycles of chemotherapy. I have been told that this drug should only be prescribed for six months for people with my condition. I now face a very uncertain future as I now have a life limiting illness. I would rate this drug at zero and advise people who have been prescribed it to research it and to always question, question, question ANY recommended treatment.

Apr 27, 2015

by Kathy on 6-MP Mercaptopurine

6 MP experience

Have been prescribed 6 MP on two separate occasions. It did take a few months for it to have any effect but it did help. Then my Gamma GT tests were really high so had to stop taking it. Try to follow SCD to a certain extent and feel that I have more good days than bad at the moment. Still taking 8 400 mg of Asacol per day. Biggest problem at the moment is joint and muscle pain.

Apr 16, 2015

by Jeneveve on 6-MP Mercaptopurine

6mp

I have been on 6mp for almost 5 years, as the ONLY long term treatment option for Autoimmune pancreatitis (a particularly nasty and dangerous complication of UC), as I cannot tolerate azathioprine. (Natural healing remedies and diet not an option).

I now tolerate it quite well, nausea virtually non existent, 3 monthly bloods normal, hair grew back after 12 months or so. I can keep the dose low (50mg) by supplementing with tiny dose (2mg) prednisolone (down from 60 mg in the early days) which apparently has a synergistic effect. I have suffered less colds, bugs in this time than everyone else !? Just a general fatigue, which dogs me and stops me from working.

I am looking forward to coming off later this year, as the AIP seems to be in remission, so will revert back to more conventional treatments and diet for UC , which mildly rumbles on despite 6mp. Really interested in LDN, but is difficult to get in UK. Hopefully I will feel brand new, without the fatigue.

Apr 14, 2015

by Jim on 6-MP Mercaptopurine

Reviews of drugs are not useful

6-mp works brilliantly for me. All my symptoms are pretty much gone, and I can even have some of my trigger foods now. I have none of the side-effects.

However, my experience with it will be of no value to you. UC is different for each of us.

We all have different things we should avoid eating or drinking. We all have different reactions to different drugs. Some people can control UC just with diet, but most of us can't.

Similarly, each of us will have different reactions to each of the drugs. Azathioprine makes me vomit at doses too low to be useful, for example. This is not true for everybody.

DO NOT TRUST ANY REVIEW OF MEDICATION!

You cannot tell what effect it will have on you by reading about how it affected someone else.

Some of the drugs used to treat UC can have serious side-effects. But you won't know beforehand if YOU will have them.

DO NOT use any review here to decide whether you should take a drug or not.

DO be aware that you may have side effects from 6-MP or anything else. You and your gastroenterologist should be looking for them.

ALWAYS take advice from your gastro about ANY treatment (medication or not)

Mar 18, 2015

by Jonz V. Stoneroad on 6-MP Mercaptopurine

6MP Review

6MP is like a double edged sword. In my last colonoscopy exam in 2013, the ulcers have somewhat quarantined itself in batches and not as spread out as in 2012 shortly before being put on 6MP. I don't have the daily bleeding and diarrhea as before but when it does happen; it happens in droves. The bad side: I got Shingles in my first month of being on 6MP in 2012, the constant fatigue was the same as having Colitis; in 2013, I had bouts of occasional nausea but for one year, things were slowly becoming livable. In 2014, around the winter, I got Bronchitis following my carpal tunnel surgery which required 2 weeks of I.V. therapy (a steroid) then a week later a really bad case of nausea putting me on Zofran tablets daily along with it in liquid form in an I.V. I haven't been as nauseous like that since I started taking Turmeric as a tea and having ginger in my diet daily. This year, I got Bronchitis once again but not in the same severity as last year since I caught it in time. In a few weeks, I will be taking another colonoscopy to see how things are. I am also on Delzicol.

Mar 14, 2015

by Jen on 6-MP Mercaptopurine

No good for me!

I feel for you all, I've had a bad flare up for 13 months this time. I'm on asacol oral and foam enemas, prednisone for 6 months, which is awful and azatheprine then I was so ill after a week so they took me off aza and put me on Mercaptopurine, I was good for one week and again seriously ill which started with the sorest throat I've ever experienced and then things just got worse, bloods went all over the place and in the end they took me off it to recover and then they'd like me to start again but when I read all the problems associated with this chemotherapy drug I've decided I'm done, I dot. Know if it's wise, but I stopped it all steroids and Mercaptopurine. I'm trying with a pure form of aloe Vera, diet and general healthy choice. I can't be no worse as they haven't got the UC under control for 13 months even with the steroids. My doctor is very understanding I just hpe the specialist will be when I see him but he didn't have to live with all the side effects from these drugs! I don't feel to bad and it's been 10 days. I'm in for another colonoscopy this Friday, which is to soon to see if my way is working but I do feel better for taking the control back, which works for me and feels good seeing the last 20 yrs it's all controlled me.

Dec 11, 2014

by Phil on 6-MP Mercaptopurine

6MP

I have had UC since 1984. For the majority of that time, I was on prednisone which did not always worked for me. I switched doctors in 2001 and he got me off the prednisone using 6MP (100mg/day) and Colazal (750mg 3x/day). I have been symptom free in in remission since 2001. I had the 6MP dropped to 75mg/day. a couple of years ago and have been fine.

Sep 6, 2014

by suzanne on 6-MP Mercaptopurine

6- mp

just got diagnosed with UC in June have been on 6-mp for two months and it has not worked. using only 50mg at first then he moved me up to 75mg and my liver went off the wall and that was only in two weeks so back to 50 and not doing so well, not sure what the next step is going to be...

Jul 8, 2014

by Jen on 6-MP Mercaptopurine

I was diagnosed with UC in 2010. Ended up on prednisone for 9 months which was horrible. Started on 6mp in 2011 and had to go up to 150 mg for it to work. I am currently on 6mp 125mg with lialda and have only had one mild flare which was recently. I have had very few side effects, and so far 6mp has been great for me.

Jun 1, 2014

by Janet on 6-MP Mercaptopurine

awful

Took it for two weeks and ended up in the hospital with pneumonia. It came on fast without a cough or even a sniffle. Severe chest pains and difficulty breathing, my Dr sent me to the ER. No more of that for me. Suppressing the immune system is not a good idea

May 31, 2014

by Lamanda Gaskins on 6-MP Mercaptopurine

6MP; so far so good

I was diagnosed with UC in August of 2012... I was first put on Lialda which worked for exactly 2 weeks... Then they switched me over to 6MP... Yes, when I first read about this medication, I was a little concerned... But I was also desperate for my life back and so decided to give it a try... It's not disappointed me... I was prepared for the hair loss, and nausea, etc... After almost 2 years, I've had none of that... Well, I take that back... Before I figured out that you need to eat before you take the med, I did experience some very light nausea... But after a few days I figured out to eat, THEN take the pill and that was the last time I experienced it... So my experience has been positive...

Feb 7, 2014

by Leanne on 6-MP Mercaptopurine

6MP huge help

I was diagnosed with UC 14.5 years ago. Flare ups were constant. Prednisone was always prescribed. I was on Salazapyrin which didn't seem to help at all. My last flare up was pretty bad. On cortisone for about 6 months. My specialist had been trying to get me to take purinethol for a while but I was too scared but after the 6 months on cortisone I thought I should give it a try. That was 7 years ago and I have only had one very very mild flare up since. A couple of days of cortisone suppository and it was gone. Purinethol has made a huge difference in my life. I only take 50 mg a day and the results of my last colonoscopy and every other colonoscopy was great. In remission. The only side effects I have are mild hair loss and a permanent rash on the back of my neck which resembles a birth mark. My specialist was talking about taking me off the medication but we are a bit worried that it might come back with a vengeance. It's known to happen. I don't want to risk it. I get a bit scared of the possibility of cancer but I am only on 50mg so I figure it's worth the risk. I am going to ask my doctor if I could go down to 25mg. My immune system seems to be fine. I don't get sick very often at all. My blood test are always great. IBS on the other hand is dreadful. I deal with that every day. I honestly don't know what's worse sometimes.

Oct 23, 2013

by Mara on 6-MP Mercaptopurine

Seems to be working, but my liver ain't happy

I was diagnosed with UC in Jan 2013. Allergic to sulfa drugs, so I was on prednisone for 5 months and Lialda. Doc added 6MP in May, and I started tapering off the prednisone, which caused me to lose about half of the hair on my head but grow a lot of facial hair (thank goodness I'm a natural blonde!) I am taking a 50 mg dose of 6MP, which is low for my weight, but my liver enzymes are elevated and I am B12 deficient, but not anemic. Not sure what that means, but I have an appointment with a hematologist and will probably start getting B12 shots because I am not absorbing the B-12 in pill-form. My doc does not think the 6MP is causing the high liver enzymes (they were elevated before I started the 6MP), but she is running more tests (bloodwork). At first, I did not think I had any side effects from the 6MP, but I have noticed a general "ache-iness." I chalked that up to being 45 and arthritic (my dad has pretty severe osteo-arthritis, and my mother had rheumatoid arthritis), but as I read more testimonials, now I am wondering if the 6MP is causing me to feel like an Old Lady. It's not incapacitating--once I get up and start moving around, I'm fine, it's just those initial steps or bending/squatting/sitting that are problematic. I'm still pissed about my hair loss, though. I was hoping it would grow back once I got off prednisone, but then I read somewhere that 6MP can also contribute to hair loss. I may have to resort to shopping for a wig. As far as my UC symptoms, though, I would have to say they are improved and tolerable. I still have to make 2 or more trips to the bathroom in the mornings, but after that, I'm usually good for the day, and the sense of urgency has gone away. I no longer fear plane trips or public places. I have also stopped obsessing over food. I have tried eliminating all kinds of "bad foods" from my diet, and it didn't make a whit of difference. Even so, I have reduced or minimized my consumption of caffeine, sugar, carbonated beverages, fruits with skins/seeds, red meat, raw vegetables, and gluten/carbs.

Jul 8, 2013

by Nikki on 6-MP Mercaptopurine

Tapering down

I was hospitalized in September 2010 for six days with a bad flare. I was put on Colazal when I was released. A little more than a year later I had another flare, but this time I met up with the doctor in time to prevent myself from being hospitalized again. I started 6MP (one tablet daily) in January of 2012, and my flare went away. Nine months later another flare started to creep in. By January things were pretty uncomfortable-- BMs 6-8x/day plus a few trips at night. Rather than up my dose of 6MP or start on Prednisone, I decided to try the SCD. I have been following it (loosely) since late January 2013 and I feel completely normal now. Almost six weeks ago I began to taper off the 6MP (I'm down to 1/2 a pill). In a couple days I will cut my dose in half again (1/4 pill) for six weeks and then stop completely.

There are warnings out there that adverse effects from 6MP can show up months or even years after stopping the drug. One thing I've noticed is that I have a strange tiny red dry patch of skin on my chin near my mouth. It started to appear shortly after I lowered my dose of 6MP, and It has been camping on my face for at least a month! I also notice that when I get a pimple, it has a strange personality. It hurts--sort of stings a little--and is watery inside. I try to avoid popping them because they just become a mess that reinvents itself. They hang out on my face for much longer than they used to.

My advice is: PLEASE PLEASE PLEASE try the SCD. Be careful about the drugs you choose, because they may seem like miracles at first, but once you stop taking them, they could bring on a whole slew of problems for you... I sure do hope that I can continue to see positive results from the SCD so that I can avoid poisoning myself with these crazy drugs. It's interesting that such a tiny little pill can affect your body in such a drastic way.

May 29, 2013

by Ken on 6-MP Mercaptopurine

Scary stuff

Was on 6 PM for 6 years and did fairly well....or so I thought. Had a major flare, June 2012. Ended up in hospital for 3 weeks. Turns out that the 6mp destroyed my bone marrow, White and Red blood cells, platelets amongst other things. Turns out that my GI doc never monitored me for these items. Supposed to be monitored every few months.

Apr 17, 2013

by Ashlee on 6-MP Mercaptopurine

6MP...I Guess Not For Me

When I was diagnosed my GI started me on Asacol, but I unfortunately developed an allergic reaction to it (pancreatitis) and had to stop. I was put on prednisone, then finally asked to try 6MP this past January. Got up to 75mg/d with no real change in my UC symptoms (cramping, urgency, tenesmus, blood, incontinence, etc), but my GI just called me today and said to stop the 6MP immediately. My white blood cell count is too low and it's also starting to effect my liver. So, back to the drawing board after some more labs later this week. All in all if this drug had worked for me I would have been kind of okay taking it since the only side effect I experienced was slight nausea at about the same time every day. It's hard to tell how well it really "worked" for me, though, because I'm still on a relatively high dose of prednisone. Guess 6MP was not meant to be.

Apr 15, 2013

by Richele on 6-MP Mercaptopurine

Sad colon

I have been on 75mg of 6mp for about four months now. The side effects were pretty hardcore at first, but have eased off a bit now. In the beginning I was throwing up every morning, Zofran is helping with that now. I ran out of Zofran the other day and sure enough, I was extremely nauseous and threw up. My hair thinned quite a bit, and I have developed painful bumps on my scalp. Itchy and painful! I also have severe joint pain, which could be a side effect, or it's because of autoimmune disease. Not sure yet. I had a colonoscopy a week ago, and it showed a lot of inflammation, ulcers and mucus all throughout my guts, so I guess 6mp is making my life a bit more liveable, but am still not in remission. Still running to the toilet 5-7x day. My DR is talking about starting Humira, but I'm REALLY reluctant. It's all a crap shoot. (intentional pun)

Apr 1, 2013

by nikki on 6-MP Mercaptopurine

good but bad

6mp helped me out of a flare after I had been on a few runs with Prednisone and it was confirmed that I had become steroid-dependent. I was worried that i would get sick or die from 6mp, but At the time it seemed to be the best choice. After ten months on6mp I had another flare,found this website and decided to try the SCD. Within a few weeks my symptoms were gone! I am still on 6mp (it's been about 13 months) but pretty soon I will be stopping all medications (I'm also taking Colazal). 6mp has been ok for me but I Ferrell like it's making me age more quickly and i can't help but think it's taking the vitality from many blood and cells.

Mar 31, 2013

by Christina on 6-MP Mercaptopurine

6mp 10 years and counting

Was diagnosed with UC at age 13. Went on prednisone, asacol, and 6mp. Been on asacol for 10years. prednison needed for flareups. Been on the 6mp for 10years now, and it works well to keep me in remission however I have concerns about the long term effects and pregnancies which I plan to have kids. My liver enzymes are closely monitored but my gastro doc warned me that I eventually will not respond to 6mp and will need to go on remicade which I'm afraid. Powerful drugs.

Mar 30, 2013

by Trevor Ferguson on 6-MP Mercaptopurine

6mp

I have been using 6mp for over a year taking 1.5 tablet so my doctor says I have a steady 6mp lvl In my blood. I haven't noticed any results or relief from my extreme symptoms on this. My diet is all I can notice from a day to day if I'm not on something extra like prednisone. I can't take Asacol, I started my treatments with that, until one day I ended up in the emergency room at 21yrs old suffering from pericarditis.. A very long four days of recovery and learning I'm a rare case of allergies to the primary UC med..

Mar 29, 2013

by Bethany on 6-MP Mercaptopurine

6MP: Not for me

I was on 6-MP for a grand total of two weeks during my first flare. It was shortly after I got out of the hospital after we found out I was allergic mesalamine drugs. The first week went fine, and I actually felt pretty good. The second week, on the other hand, was another story. I was debilitatingly weak to the point that I could barely get out of bed. I was nauseous all of the time and throwing up when I did venture to try and eat. Not even Zofran was helping with that. On top of that, I kept getting palpitations and difficulty breathing and could barely go four words without crying. It was miserable. I called my doctor who made me come in ASAP (love my doctor by the way) to have labs drawn and found out I was toxic. So needless to say, worst drug ever.

Mar 29, 2013

by shelly on 6-MP Mercaptopurine

DANGER!

Not for me...allergic and being masked by prednisone...as I tapered the pred. Boom...nasty forever rash from my neck up. Still have remnants of rash on my forehead-forever reminder. Felt terrible on it and it even straightened my curly hair-No Joke! Be careful!

Mar 28, 2013

by joanna on 6-MP Mercaptopurine

worked one time but not the next

i used 6mp along with prednisone, remicade, flagyl, cipro, and canasa to get in remission the first time around. it's hard to know exactly what was working, but i feel like the 6mp made a difference. i know this because when i had to stop it due to high liver enzymes, all my symptoms came back even though i was on remicade, too. when i got back on it at half the dose, it did't do anything. i think the 50 mg dose was effective for me but also damaging to my liver. the 25 mg dose was not strong enough.

Mar 28, 2013

by Mona on 6-MP Mercaptopurine

6MP

Every time I encounter a flare up, the routine is: quick fix - prednisone plus increasing doses for Azathiopurine. I finally got to the point from starting with 50mg to maintaining in remission for 6months on I believe somewhere from 200-300mg. Along with this dose, Asacol 400mg (4 pills 3x a day) - I thought this combination of 6-mp and Asacol will finally put me in remission for longer than 6months, but I suddenly had a severe flare. I maxed out my dose for using this 6-mp after doing promethues blood lab results - so then tried remicade with only 100mg of the 6-mp azathiopurine. The combination wasn't strong enough so now I'm on 10mg/kg bags of Remicade infusion along with 200mg of the azathiopurine (6mp) and Asacol (12 pills each day). The only thing I never liked when going on high doses of the azathiopurine is the intense nausea I get! It wakes me up in middle of night having to need to eat otherwise I feel I'll vomit or pass out!

Mar 28, 2013

by Joe T. on 6-MP Mercaptopurine

I think 6mp might have been toxic to me. When I was on it, my entire body was stiff and in pain. It made me feel like an arthritic 90 year old with the flu, which was weird to me at the time because I knew uc sufferers who've raved about the benefits of 6mp. And even though I kept on complaining, my GI made me stay on it for a couple months until I finally just told him that I was done poisoning myself. Oh, & it really didn’t help with my uc symptoms. Once I stopped taking 6mp, I started feeling less & less like I had one foot in the grave. After about 10 days off it, I was back to my normal ibd symptomatic self. If I could, I wouldn't give 6mp any stars!

Mar 28, 2013

by Janene Gillen on 6-MP Mercaptopurine

I used 6-MP along with the Lialda to control a flare. I had good results but I was also taking golimumab injections in a drug study. Did not notice any side effects until I had to discontinue due to the diagnosis of kidney cancer.

Mar 28, 2013

by Heather on 6-MP Mercaptopurine

Not All Bad

I was on it for a year and it put me into remission which was great. I didn't have any side effects other than towards the end it made me anemic and I had to come off it.

23 Responses to 6-MP Reviews

I’ve been on 6MP for about four months. I have developed liver cysts & will have another ultrasound in 5 months to see if they are stable. I am also on Remicade infusion, Lialda & Rowasa enema. I was in a flare for over a year & now finally in remission with this combination. Not much choices after these if they stop working.

I think 6mp might have been toxic to me. When I was on it, my entire body was stiff and in pain. It made me feel like an arthritic 90 year old with the flu. And even though I kept on complaining, my GI made me stay on it for a couple months until I finally just told him that I was done poisoning myself. Oh, & it really didn’t help with my uc symptoms. Once I stopped taking 6mp, I started feeling less & less like I had one foot in the grave. After about 10 days off it, I was back to my normal ibd symptomatic self.

Btw – did you have the Thiopurine Metabolites test to discover the high liver enzymes and if so how far into treatment were you? I am having similar symptoms and my 6MMP levels after 13 weeks – it is supposed to be under 5700 and I am at 30,000+ .

Been on 6MP for about 6 weeks. Waiting for blood work to see how liver is doing. no problem first t2 weeks. Weeks 3 7 4 felt very nauseous and exhausted. Likened it to my extreme morning sickness I had with my pregnancies. Week 5 has not been as bad. still on prednisone 10 mg. daily. See doctor this week to go over blood work and if I can start tapering off prednisone which I’ve been on again since Dec. ’12. Could not take Lialda. Extremely allergic to it. Chills, bleeding, nausea,headache, ripping apart gut. Afraid to start 6MP after the Lialda reaction.. Thank God this may work. Did think seriously about just going off meds and see what happens. I really felt poisoned by all the unnatural chemicals in my body BUT…who knows what could happen. I’m just diagnosed with UC since dec.’12. I’m still trying to come to terms with the fact that I will always have this condition. It has shaken me up so much emotionally because I am 59 and always been blessed with good health. I should count my blessings, right?

My daughter has used 6mp on and off for two years. The first time it stopped working and they put her on Remicade which may have caused vasculitis in her left eye. She is now legally blind in that eye and will never be able to use the biologic meds like Remicade. She was put on Cytoxan infusions for the vasculitis which also put her colitis in remission. This is a very toxic drug so she could only be on it short term so the colitis came back. They put her back on 6mp but did the metabolic blood tests at Prometheus labs and discovered she needed to be on 300mg. This put her back into remission and allowed her to come off prednisone after two years of use. Now however, her liver counts are too high so they had to drop her to 50mg with allopurinol to help take uric acid out of the liver. She also has severe osteoporosis which is probably from a combination of 6mp, prednisone, and omeprazole. So far she is doing well and we will have her blood tested again to see if her liver counts are down. If not, I am not sure what is next…we kind of ran out of options. All in all…6mp did put her into remission with few side effects but it is very hard on the liver. She is tired all the time and has also had kidney stones but it is always hard to tell what actually comes from medication and what is just from the autoimmune disease itself.

I was diagnosed with U.C. at age 21 [approx. 7 years ago] and thought my world was ending as a junior in college. My doctor initially started me on Asacol, but within two weeks I was hospitalized for 5 days due to an rare allergic reaction, which caused pancreatitis. After my allergic reaction, my doctor prescribed prednisone and started me on 6-MP. Within six months I was off the prednisone and taking 75mg of 6-MP daily. I stayed in remission and was able to live a “normal” college life for 3 years without a single flare! No special diet or extreme measures – just 75mg of 6-MP. Since my three years of remission, I’ve had two flares [usually about 1 1/2 years apart] and my daily dosage has gone to 100mg. A month of prednisone ~25mg typically puts me into remission. I’m very fortunate that I do not have any adverse side effects… I’m very active [marathoner, tennis player, & surfer], I sleep fine, & can eat just about anything I want. Every 6-months I have blood work done to make sure my liver enzymes & white blood cell counts are normal. So far so good… The only thing that is now coming into play is the fact that I would like to have children one day, which means I would need to go off the 6-MP for at least six months before trying, which is sure to cause a flare.

I am a huge fan of 6-MP [on it for almost 7 years now] and would recommend it to anyone who is having a hard time controlling his/her U.C. symptoms; however, it is very IMPORTANT to have regular blood testing while on this drug!

I was diagnosed with UC at about the age of 26. Since then I have been on and off prednisone regiments along with Asacol etc.. You all the know drill! Finally I started 6mp and so far so good, no side effects. I’m a natural worrier so naturally I think about the rare side affects like Lymphoma but I try to tell myself, “what’s the alternative at this point other than surgery?” It’s good to hear that people have responded well to 6mp on here. When you read the FDA warnings it makes you want to stop the drug immediately but as you start reading user stories it helps put my mind at ease.

Wow! I need some help with a decision. This has been a rough journey. I was diagnosed w U.C. in 2009 and on Lialda 4800mg/daily in remission until a Jan 2012 hospitalization/flare which then added Imuran 175mg/daily to the regiment. Coincidentally, shortly thereafter I got sinusitis and was to have surgery but because of the risk with autoimmune meds it would be dangerous. Worked with the GI to try going off of Imuran (staying on Lialda, probiotics, supplements etc…) and the sinusitis cleared up. I decided to stop taking Imuran because of that side effect and by November 2013 flared and ended up in the hospital released with a script for 6MP. 4 week appointment no improvement the doctor said wait until 6 to 8 weeks, 8 week appt. no improvement the doctor said it takes ‘at least 3 months’ then I started getting abdominal pain and reflux. I was given a script for Protoxin which did not work. Went in for a upper GI endoscopy which was ‘visually’ clear and was prescribed Dexilant which did not work. Biopsies were taken. The GI wrote lab orders for a TPMT (liver enzyme test). I called the doctor asking about the pain and reflux and he said up the 6MP from 150mg to 200mg or 33%. I asked him “Doctor, did you look at my blood work since I have been on this for 13 weeks”. He said he had not and would call me back. To my surprise he called back and told me my TPMT/6-MMP levels in Liver were 5 to 6x (30,000) the range of <5,700 and to CEASE taking 6MP immediately and call him in 3 days. No direction on LIVER damage (which I understand is repairable) nor what to do if I flare without my immunomodulator.
1. Does anyone have experience with what happens after levels reach this drastic of an amount?
2. How often do those on 6MP get tested OR do you recommend TPMT testing?
3. Is my next option biologics since I cannot take Imuran nor 6MP?
Alternatives to biologics? since my doctors have only increased dosage or gone to the next level of medications.
Any advice on liver toxicity would be great as it applies to U.C. especially and anything I need to be on the look out for as well.
Adam – this site is a gift. Thanks

Were you still on the immunosuppressants when your sinusitis cleared up? And were you on the immunosuppressants when it started? I’ve been on 6MP and Lialda for 5 years and this past year and a half I’ve been batting a bad case of sinusitis. My ENT never cautioned me regarding sinus surgery because of the immunosuppressants, so I had sinus surgery 7 months ago and am still having sinusitis symptoms. My U.C. is under control but I’m worried the drugs are affecting my recovery from sinus surgery. I’m curious to hear about your U.C. and sinusitis!

My son been taking 6 mp for two years , he gets check up every 6 months , this medication has to be monitored very closely !! So far is working but I want to find other alternatives !!! I wish there was a cure for colitis !!!

I was diagnosed with UC back in the mid-90s. I went through the hell like most everyone who has this terrible affliction. I tried just about every remedy. The only thing that gave me relief was prednisone. I was on it, off it, on it, off it, you know the routine. I knew every public restroom within a 25-mile radius of my home. My doctor had been trying to talk me into trying 6-MP for quite a while. I was leery about it since it was a form of oral chemo. Out of desperation, I gave in. That was in late 2001. After a few months of ups and downs, the MP finally settled in. I have been symptom free since. Everything is normal. My blood tests are good. I have been thinking of weaning myself off 6-MP to see if I could go without it. I am afraid to do so. My doctor says yes, indeed, my UC could return if I did. I am wondering if anyone else stopped taking MP after good results such as mine and what the consequences were.

John T. -I’ll respond…though it’s MONTHS later! I was diagnosed with Crohns in my 3rd year of college, when I was in the ER for abdominal pain in April 2010. This all started after eating in the student cafeteria which sent ALL of us to the bathroom. I stopped eating there, but had abd pain which apparently was due to the ileum inflammation. I’m a “mild” case and never had any other symptoms besides abd aches. It was a hard pill to swallow (excuse the pun) with top doctors wanting me to go on 6mp, which I refused and delayed. I took: entocort then Pentasa then 6mp, but in 2012 I was feeling fine and terrified of the side effects, so I stopped everything. For the last year and a half, it’s like I never had anything! Well, the colonoscopy this May saw some inflammation and I suspect they insulted the area with biopsies, causing symptoms to come back. Despite still being mild (thank God and knock on wood!) I do notice new spots of abdominal pain….so yes I believe 6mp or pentasa or whatever did quiet my system even when I was not taking anything, but it can come back….years later, a little bit worse but I’m glad I had that experience…it woke me up to take this seriously. I guess I had to feel it to believe it, even though I suspect a pathogen/bacteria is the root of all this(don’t we all?) good luck!

I just had the exact same experience. 15mg prednisone for 6 months…started 6mp. 8 days into 6mp started waking up with fevers, 101F then 101.5F, then 102.4F. I also had extreme joint pain in my knees. Doc said to stop 6mp. Next morning 98.6F. Still sore knees (first time in my life) but has been going away slowly. Will report more later. Sorry we had to go thru that. Some ppls biochemistry just dont like it.

Update to my last post, turned out the 6-mp reactivated the HSV1 (cold sore) virus in my body and that was what was responsible for my fevers, confusion, and other symptoms. Stopping the 6-mp helped my immune system fight back, but the specialist i saw still put me on valtrex to help with the remaining confusion symptoms. This actually was very dangerous because if my doc hadn’t stopped 6-mp i could have possibly got viral mengingitis due to HSV1 reactivation. Make sure your doctor monitors you for several types of virus reactivations!

I started taking 6mp six days ago. The first three days I coincidently had three good days. The last three days my colitis symptoms are worse than before I started the medicine. Is it a coincidence? My doctor said the medicine would take 2-3 weeks for me to see any potential improvement but my symptoms getting worse isn’t something I expected.

After a really bad flare in 2013 that put me in hospital for 3 weeks, with IV steroids not working, I was eventually given Infliximab (3 doses). As this drug is only licensed in the UK for emergency cases, my Gastro Dr had to find something else that I could take as a longer term maintenance drug. That’s when I started on Mercaptopurine. The side effects were awful at first. Really bad nausea, loss of appetite and certain foods tasting really strange (I’d have to follow every savoury dish with something sweet, otherwise the taste would stick around for days .especially garlic, onion or spices). I bitterly regretted the day I ate a pickled onion…OMG! I also got lots of infections in the first few months, the worse one was a terrible throat infection that came on so fast that I went straight to casualty as I felt like I couldn’t breathe. My Dr was impressed that I’d persevered for over a month, but with some tweeking, checking bloods regularly etc, my dose was reduced and I was advised to take it at night to avoid the nausea. I’ve been on it now for a year (50mg one day, 25mg the next) and the side effects are pretty much gone. My colitis symptoms have been controlled until 2 weeks ago when the stress of a new job led to some bleeding but that’s all easing now so I’m hopeful it continues to work for me. It is scary taking a chemo drug, but if it works, I’m happy to take it…. for now!

I just started a month ago 50 mg. I stopped bleeding and feel I feel like I am coming out of this flare. But these threads scare me!!!! I feel good but nervous at the same time, this is no way to live but we are stuck with it.

Hi There
I am looking for advice i have crohns i take 2 grams pentasa grauales daily.I had colonoscopy two months ago inside the sigmoid there was multiple polyps to many to remove lots of inflamation i got a terible fright byopsie came back clear but now daoctor wants me to take 6mp think i might have avascalur necrosis over predisone use .I am affaird to take 6mp over side affects but if i dont im affarid polyps will turn nasty.Advice please thanks.

Have just started on 6mp like most people I have read the side effects but I can’t wait to get some sleep and rest! Prednisone and pentasa can’t get me into remission so I would love to hear some encouraging stories please. Don’t want to have a colectomy but my quality of life is not good

I’ve taken 6 mp for almost 8 years. It took about 3 mos to kick in, as my doctor said it would. We also had to tweak my dose. At first it made me SOOO tired and nauseous. Then we split my 75mg dose – 25 mg AM & 50 mg PM. Made all the dfference, all side effects disappeared. Once it kicked in it kept me in remission almost all of the time, with the occasional mild flare that I treated with Canasa for a few weeks and always went back into remission. Unfortunately, this year over several months 6mp has stopped working. For the past several weeks I’ve been in the worst flare ever. At this very moment my doctor is working to get Humira approved by my insurance and as soon as possible I’ll be starting on that. My doctor told me it’s not unusual for 6 mp to stop working for some people. I hope Humira does the trick, and that any side effects are tolerable. Wish me luck!